Abstract Introduction In the US, low-sodium oxybate (LXB; Xywav®) is approved for treating cataplexy or excessive daytime sleepiness (EDS) in patients aged ≥7 years with narcolepsy and has the option for individualized dosing. However, research on how dosing patterns relate to treatment satisfaction is limited. To help address this, the LYRICAL study assessed real-world LXB use in US adults with narcolepsy. Methods This longitudinal, mixed methods study gathered quantitative and qualitative data from participants currently taking LXB for ≥12 weeks. Online surveys (n=59) comprising standardized patient-reported outcome instruments and de novo questions were administered at enrollment, week 12, and week 24. Interviews were conducted with a subset of participants (n=15) at enrollment and week 24. Descriptive analyses assessed LXB use patterns, including LXB dosing regimens, any variability/changes since enrollment, and perceptions of individualized dosing. Results In 59 participants, mean age was 34.7 years (standard deviation SD=8.9), and most participants were female (91.5%) and White (91.5%). Mean LXB treatment time was 98.9 weeks (SD=73.4). Nearly all participants (96.6%) reported taking LXB twice-nightly, most commonly 4.5 g + 4.5 g (34.5%), for a total nightly dosage of 9.0 g (range: 1.0–9.0 g). Eight survey participants (13.8%) were taking asymmetric doses at enrollment; the most common reasons were to help fall asleep (n=3) and avoid feeling groggy in the morning (n=3). Participants with dosing regimen adjustments (n = 12) between enrollment and week 24 were more likely to report improved convenience and effectiveness (Treatment Satisfaction Questionnaire for Medication version 9). All interview participants reported shared decision-making with providers; individualized titration helped them reach their current dose in a mean 10.6 weeks (SD=10.7); the most common consideration for dose adjustment during titration was sleep quality. Ten interview participants reported that individualized regimens were beneficial for their lifestyle, offering greater control and freedom. Conclusion Real-world data from LYRICAL highlighted that individuals with narcolepsy valued the ability to individualize their LXB dosing regimen through shared decision-making with healthcare providers, contributing to optimized symptom control and improved treatment satisfaction. Support (if any) Jazz Pharmaceuticals
Drachenberg et al. (Fri,) studied this question.